One of the pamphlets was the AA’s “2010 Alzheimer’s Disease Facts and Figures” publication (download by clicking here). In reading through it, I found it interesting that in a section titled “Causes of Dementia” on p.14 the organization is quite forthcoming about the heterogeneity of “AD” and its overlaps with normal brain aging (these being the two major “myths” we expose in the book).

Here is the passage that caught my eye:

Although Alzheimer’s disease is the most common form of dementia, data are emerging to suggest that the attribution of dementia to specific types may not be as clear cut as previously believed.(29) A study by Schneider and colleagues reports that most older community-dwelling people (mean age at death, approximately 88 years) have changes in the brain suggestive of disease. People with dementia often have evidence of multiple types of brain disease.(30) (references included below)

The section goes on to discuss that less than half of the 80 autopsy samples Schneider et al looked at showed evidence of just plaque and tangle pathology, while the majority had evidence of some combination of plaques and tangles, infarcts (small strokes), Parkinson’s and Lewy Body features, and other age-related pathologies. The section concludes that “there is reason to believe that the causes of dementia may be much more complicated than originally believed.”

Also of note is the fact that in this 74-page document, the word “cure” only appears one time.

I see this shift in language as important for several reasons. First, we gain nothing from perpetuating the myth that AD is a singular, specific disease that can be cured with increased investment and 5 more years of research time. This is scientifically imprecise and socially misleading, and Peter and I have often given voice to our concern that these myths have built false hope in pharmacological silver bullet cures.

Second, accepting heterogeneity and moving away from the “c-word” can guide us towards common sense prevention. For instance, knowing that vascular pathology plays a crucial role in dementia gives us even more reason to protect against vascular risk factors across the lifespan by exercising, eating well, reducing obesity, not smoking, etc.

Further, accepting the fact that dementia may not be curable underscores how important it is to help modern communities adapt to aging populations and regard memory challenges with solidarity and compassion rather than fear and stigma.

I applaud the AA for their forthcoming report, and am pleased we were able to come together in South Florida over the weekend.

Comments

Is a choice a words, reflective of a choice of worlds, or in the case of the AA a choice of visions, missions, fundraising appeal letters? Early this year I discovered some equivocation on their part on the percise definition of Alzheimer’s disease. Are these cracks in the imaginary wall they long ago built with press releases, hopes, theories, self interest, and proven fund raising strategies?

Or……who knows. When they change their vision statement, when they get out of the business of devoting all too few program dollars to promoting “healthy brains” and being to devote more and more of the dollars, signification more dollars to psychosocial research, developing and promoting groups for people with dementia and most all stages to attend – they already have them for caregivers!….then, maybe I will feel hopeful that their ship has turned around, the fog machines they themselves created and maintain have been turned off. Until then…….stay tuned, but don’t spend a lot of time waiting for “the new day to dawn.”

Can one person really make a difference, can two or three or a few? Apparently yes! Doctor Whitehead and Danny and Eden Alternative and… already have. I sit amazed and grateful! While I was standing in line to be sentenced to Alzheimers’ , based on the old model, Providence led me to their sites, and the book “The Myth of alzheimersw” it was fresh air and water to a dying and drowning soul! I too have noticed an almost perceptable change in the language of AS materiels and I applaud it. Is adjusting language necessarily followed by changing philosophy and funding. Time will soon tell. Oh, I do have cognitive less ability..but it wasn’t fate, or God, or fatalism, it was genetic and chronologic, and not taking care of this body temple God made for me! Thanks so much for a new lease on life and for Alzheimers patients and families!

P.S.

I too eschew commenting after Richard whose getting “to the points” and on point leaves me breahthless and hopeful!

Dave – thanks so much for your encouraging words. You and Richard are also carriers of hope, and your increased visibility and purposeful action in the world helps to undercut the old model and build a new understanding about brain aging. Thank you for being a part of this community
~Danny

It’s been awhile since I’ve been back “home’ with the Myth of Alz family! Thank God and thank you for truly tossing me a life line when I was going under!

I did my first and hopefully not last Alz Association Walk late last year. In my support letters I turned the topic of alzheimers diseases around from cure to care. Other folks doing likewise have apparently had an impact, at least on their literature.

PS. Is raising funds for Alz Association feeding the beast, or helping The Cause?

Hi Dave, family is a good thing and thanks for your support. I have been pondering your question about supporting the Alz Association. I think the time may be coming to take them on a bit more,especially around the priorities for the new NAPA (National Alzheimer Project Act)czar. I will be blogging about this. Peter